Monday, January 6, 2014

Hey there readers! I thought I'd take a minute and explain more about what I alluded to at the last Whatever Goes Wednesday link party. I'm sure you've noticed the lack of posts over the last week, and there's a very good reason why.

I mentioned quite some time ago (at another Whatever Goes Wednesday linky) that I was pregnant with identical twin boys due in March. It was in November that we found out that they were identical, but it was at the same time that they were diagnosed with Twin-to-Twin Transfusion Syndrome. (TTTS) Essentially, this means that one twin isn't getting his share of blood and nutrients, while the other is getting more than he needs. Since our twins shared a placenta, the veins and arteries that connect them to the placenta also connect them to each other. In most cases, the connects to each other balance out and both twins are still able to get a fairly equal share. In cases of TTTS, the veins and arteries of one twin (known as the donor) go to get the blood and nutrients, but instead of going back to the same baby, they go to the other (known as the recipient), without getting much back in return. This is very serious and life-threatening for both twins. The donor will eventually go into organ and heart failure because he doesn't have enough blood to keep his organs functioning or enough amniotic fluid. The recipient twin's heart goes into overdrive pumping all the extra blood and eventually it gets so damaged and enlarged that it shuts down.

There are a few, relatively new, treatment options, one of which includes an experimental surgery. This is the route we ended up going, after being seen by some specialists at the Denver Children's Hospital. During the surgery, the doctors find the problem blood vessels and then use a laser to sever the connection. This essentially fixes the transfusion problem. The twins and I had our surgery right before Thanksgiving, and then we were being followed weekly by a specialist here in Idaho Falls. We knew there were risks to the surgery, and in our case there ended up being a very big risk. In order to get to the placenta during surgery, the doctors had to take the tube and laser through our donor baby's sac, which meant they left a small hole that could ultimately turn into something bigger.

The membrane separating them seemed to be intact. The doctors had a hard time finding it because the boys were always so close to each other. Without this membrane, the boys would be considered to be in the same sac and would be at risk for a whole new set of bad things. However, we got a very clear picture of it at our appointment on December 23rd. This was good news because it meant that they were still in separate sacs and not at risk for the things that could happen if they shared a sac.

Our next weekly appointment was on December 30th. After the ultrasound, the doctor informed me that our donor twin no longer had a heart beat. I was sent immediately over to Labor and Delivery so that we could deliver both babies. Since they shared a blood supply, there was significant risk for clots or toxins being passed to the other baby. I was 29 weeks 3 days at the time of delivery. During the C-section that we found out that their cords had become tangled and one was wrapped too tightly around the other. This means that the membrane separating them either hadn't been intact or had broken sometime during the last week.

Anyway, as you can imagine, this has been absolutely devastating to us. Not only am I recovering from major surgery, but I have one tiny little boy in the NICU, and we had to bury our tiny little Jack on Saturday. I feel like I spend most of my day either crying or holding back tears. It's hard, but moments like this make it seem better...

This is our tiny little Emmett...and we're absolutely in love. He was born at 29 weeks weighing 2lbs 11oz and is 15" long. He's so sweet, and absolutely perfect, he just needs more time to grow. He's been breathing on his own since birth, but they have him on Vapotherm to help keep pressure in his lungs. He's using a feeding tube and they're slowly increasing his amounts. After a week, he's already up to 9ml each feeding and they're increasing by 3ml every 24 hours. The doctors are impressed with how well he's doing, since they expected a much sicker baby. The nurses all say that he's very mild and calm, but he can be feisty when he doesn't want to be disturbed. He has the sweetest, saddest little cry that just tugs at my mommy heart. It absolutely kills me to have to leave him at the hospital every day, but I know that they're taking good care of him. We're planning for him to be in the NICU until March, but we're hoping to have him home with us sooner!

Anyway, this is why things have been a little crazy around here. I apologize if you've emailed and I haven't gotten back to you yet. I'm going to try to catch up on emails sometime this week. I also started a little website on Caring Bridge so that we could keep our family and friends updated on Emmett's progress. Most of our family lives far away, so this is easier than making 20 phone calls to update everyone. I've also written more in depth about our pregnancy and the complications that arose during the last 30 weeks. I'm still working on updating some of the details from the last few days and getting more pictures posted. As you can imagine, I'm pretty much deliriously tired, so the moment I sit down to do something, I start dozing. Anyway, you can find the website here:

(Please note that even though the website asks for donations and even make it seem like they go to help Emmett, they are really only donations for the Caring Bridge website, not for us. So please don't feel like you need to donate to them.)

I don't think I'll put too many updates here on the blog, but I may occasionally put some up on Facebook or Twitter.Thanks for understanding about the craziness going on over here. I promise things will get back to the way they were. I love having something "normal" like this to keep me grounded and to keep from going crazy while worrying about my boy. Any other NICU parents (past or present) out there? Any words of advice? This is all so new and overwhelming to us!

I am so sorry for this emotional roller coaster you have been on. My deepest sympathies on the loss of your precious little Jack. I hope Emmett continues to grow and progress well, and that you will have him home safely as soon as possible. Praying that you will have the strength to endure it all well!

I'm so sorry for the loss of little Jack. I, too, lost a twin. It was 28 years ago and much earlier in my pregnancy, but and it still makes me sad that we missed out on raising them together. It is such a tangled twist of emotions to be mourning the loss of one and the survival of the other. I pray for you and your little family. Peace be with you.

I'm so sorry for your loss of Jack. Praying little Emmett keeps gaining ground and thriving. He's a beautiful baby! Big hugs to you...know that God is close to the broken-hearted...He is there to comfort you and hold you up.Blessings,Nici

So sad for all that your family has been through. Put yourself and your family first. This is just a blog. Your real life is way more important. So sorry for your sadness, so happy for your happiness with your tiny Emmett. Such a juxtaposition of feelings on top of recovering from childbirth. Give yourself time, lots of time, and take care of yourself and your family.

Thank you for sharing this. I imagine it was very difficult. I am so, so beyond sorry for your loss of Jack. I cannot imagine what you must be going through, particularly as you are at the same time celebrating the life of Emmett (who is beautiful). I will keep you and your family in my prayers.

My heart sank as I read your word and tears began to fall. I lost my first son at 38 weeks. I will forever remember the doctor saying Andrew had no heart beat. ((HUGS)) I also remember the bitter sweet joy when my next son was born... happiness but the pain of know Andrew would never be in my arms. I can not imagine having both of those feelings at the same time as you do. If you need someone to talk to or resources on dealing with the emotions, you can contact me. I know for me, realizing I wasn't alone with the feelings I had helped me greatly. I know a great bunch of women now who also lost babies and we walked hand in hand, supporting each other through the tuff times and almost a decade later still are there for each other in those down moments but also in our every day joy...... goggle Silent Grief. Not sure if the site is still up but I owe it a lot. bornagainfarmgirl@gmail.com

Miranda, My heart is still hurting, and yet, happy for you. Mostly the hurting part. I've let a few of the people we both know about you and the babies. We all feel very sad that Emmett didn't make it. If I can make anything better or easier, please let me know. My heart is just aching for you. Next time I see your mom, I will probably break out in tears since I almost do that before you were pregnant. We miss your family. We love you. May you feel some peace and comfort from our knowledge in eternal life and families.

Oh Miranda. Rachel from Architecture of a Mom reached out to me about your situation. I also lost one of my twin daughters to TTTS in December 2011. I blog about that loss and overcoming it, as well as raising a single survivor on my two sites, katbiggie.com and fightTTTS.com . Are you in any of the FaceBook groups? We have a Survivors with Guardian Angels group, a Grief Support, Survivor Support. I invite you, if you are not already in them, to join us. Please know that I am here for you, and although you are strong now while you have a baby in the NICU (I can relate to that, my girls were born at 30 w 5 days and my donor weighed only 1lb 10oz. She is also the survivor. She spent 84 days in the NICU and is now a completely caught up and perfect two year old!) once your life settles down again, the grief may set in hardcore. I also run a Facebook page called Sunshine After the Storm based on a book that 30 other grieving parents and I wrote called Sunshine After the Storm: A Survival Guide for the Grieving Mother. I hope you'll come like the page and you can find resources and others who know your pain and situation. Love and hugs to you! Alexa (also always feel free to email me at katbiggie1@gmail.com)

So brave of you to tell us your sad story. I have lost two babies (not in the same way) but reading brought it all back. Sending you lots of hugs and thinking of you all at this sad and happy time Take care of yourself and your new little one. Rosezeeta.

Sending hugs and good vibes your way! I'm so sorry for your loss of Jack. We had a singleton arrive early and he was in the NICU for a time. It was hard, but we felt comfort knowing that they could care for him in ways we couldn't. We spent as much time as we could with him, but with an older sibling sometimes that made it difficult. Now our son is a wild and crazy 16 month old full of spirit and life and quite an opinion on just about everything. Ha! Take care of yourself and your sweet baby boy.

I can't imagine what you and your family is going through right now. The joy and the heartache. My thoughts and prayers are with all of you at this time. I pray that Emmett gets stronger each day and that you recover physically and emotionally. Blessings.

Blessings to you all, and to Jack, born into Heaven. Even a normal birth can leave you exhausted, but this sounds so very much more difficult. I know a mom who had a son with a rare and very serious genetic disease. He wasn't expected to live more than five years. He's 19 now. So, have great faith that he can grow strong and resilient in time, and you and your husband will, too. I hope you have lots of help.

I am so, so sorry to hear about your loss. And I wish with all of my heart that little Emmett will keep on doing as good as he does.I am sure Jack will never be forgotten. Emmett must miss him so much...

Oh my gosh.. I am so soo sooo very sorry for your loss. I wish there were words that would truly provide you comfort and healing at this time, but I know there are none. My thoughts and prayers are with you, your family and all the people who are there to support you and lift you up. My heart aches for you.

Tears are running down my face as I read this.....Hoping you feel the love from all the comments.....cannot imagine your heartache and praying God's blessings for you and your family. Emmett is beautiful.

Sweet, sweet mommy - I am so sorry for your loss and the pain of this situation but smile through the tears as I see that gift from God sitting on your chest in the picture above. Prayers from near and far are with you all through this entire ordeal. Stay strong and faithful - you have a precious little boy in Emmett counting on you for that. I know goodness will soon prevail and we are all here to support and lift up you and your family through it. xx, b

I'm justing getting around to catching up here, and I'm in tears. I'm glad you and Emmett are doing better, and I am so sad for your loss. I know Jack is an angel watching over his brother Emmett making sure he continues to grow and become better. I pray for you all, and that God will continue to bless each one of you. Take it easy and focus on your sweet family. Blogland will be here when you all recover. You are a precious, and y'all have a beautiful son.

Oh my I am so so sorry. Words cannot express the pain you are feeling or make them go away. Just please know you will see your sweet Jack again and have the chance to raise him. He must be a very special spirit to be called home so soon. Our thoughts and prayers are with you and your family. Marcy ~ day2day SuperMom

Oh, Miranda, I had no idea you were going through all this. I'm so sorry for the loss of Jack, what you are going through must be so hard. I am thinking of you and sending prayers that Emmet will be home sooner than March.~Jamie

I have no real words other than you are all in my thoughts and prayers. Fight hard little Emmett, you will be home soon. I know a feisty little 27-weeker so I know he will continue to amaze with his strength. Big hugs to all of you.